Embracing disability: from parents who've been there

When your child is first diagnosed with a disability, it can be a confusing time. These families share how they've come to embrace the diagnosis and now face the future with excitement and hope.

When you first learn you’re becoming a parent, it’s pretty normal to go through a range of emotions; joy, excitement, trepidation, hope and maybe a touch of fear. The game of ‘what if’ that we all play, goes up a notch, and if you’re anything like me, you’ll lose hours in daydream wondering what the world will hold for this little person you’re now responsible for.

I’m guessing what no one really prepares themselves for, is a child with different needs. I know I certainly didn’t.

So when our daughter was born, we were wholly unprepared for what lay ahead. To be fair, I’d suggest that most parents are in this position; we all just kind of make it up as we go along. We’ve just had a slightly different path to follow.

When a diagnosis of Autistic Spectrum Disorder (or ASD) was given by our paediatrician when Poss was five, it was both devastating and a huge relief. We suddenly understood the ‘why’ behind all those years of questions.

She wasn’t just a difficult kid. We weren’t just terrible parents. She has ASD. Her quirks and challenges made sense; and now we had a way to help the world make sense to her.

Speaking with other parents who have been given a similar diagnosis for their child, I know we’re not alone in this.

“In the early days, Sam was slow to crawl, then to walk, and talk, and would become extremely distressed at almost any provocation. Anxiety, frustration and emotional meltdowns were common - we struggled to understand what he was going through, and tried to see the world through his eyes,” Peter Owens recently shared with me about his son Sam, now 12.

“But with early intervention, and a LOT of love and patience, Sam has surmounted one hurdle after another,” Peter says.

Like the Owen family, the diagnosis kicked off a round of appointments and therapy that seemed to last for years. Actually, it did last for years. And with every milestone, every new thing ticked off, every new skill mastered, our daughter now aged 11, has blossomed.

That’s not to say there aren’t still hard days. However, she is fortunate to have a team of people around her, who support and help her to be the very best she can be.

It’s a similar scenario for the Owens. “Now at the age of 12, we have fewer and fewer challenges to face, says Peter. “Sam is a happy, bright considerate boy with a lively sense of humour.”
“His behaviours can sometimes seem a little odd to his age peers, but he attends a supportive school where the other children are very inclusive and protective of him.”

While it’s probably perfectly normal to be initially apprehensive, overwhelmed and upset upon receiving a special needs diagnosis for your child, it’s something that I now wouldn’t change for a second.

For every challenge ASD has brought, it’s given Poss something in return; her sense of loyalty, her ability to think in the most logical way, her intense focus and determination, her unique way with words, her honesty, I have no doubt all stem from this different wiring in her brain.

I say that with six years of hindsight and experience, but if there was a message that I would give to any parents facing into a new diagnosis it’s to let go of all your expectations of what you thought parenting would be, and just embrace wherever this journey takes you.

“We have come to discover that nothing about anyone's future is guaranteed, whether on the spectrum or not,” says Peter. “Take one day at a time, and celebrate all successes, large or small. And while patience isn’t always easy, it IS worth it.”

And remember, that every person on the autism spectrum is different. There is a saying in the ASD community that if you’ve met one person on the spectrum, you’ve met one person on the spectrum. This means that while people may share a common diagnosis, each and every person, and how ASD impacts their life, is unique.

Peter puts it best: “Don’t panic, a diagnosis is not the end of the world. Forget everything you’ve heard, or read about autism. Love is a very powerful influence on development – constant engagement and the willingness to face challenges together has a value beyond measure.”

“There is every reason, with the right support, that your child’s life will continue to be rewarding and happy, so let yours be too.”